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Thursday, June 25, 2009

when "just in case" becomes just too much

the last couple of weeks have been a little rough here. well, i guess "rough" is a matter of perspective. i have lived through worse. but allow me to vent for a moment. or an hour, really, because i've had a lot on my mind. hopefully i can make it all make sense.

i used to consider myself a spontaneous kind of gal. the type where, if i wanted to just go away somewhere for a weekend, i would do it. if i wanted to pick up and move to another place not really knowing what lay ahead, i did it.

when i got married, this was something i loved about ben. spontaneity. we had such a fun time, just kind of doing what we wanted to do, when we wanted to do it. not the best planners, but we were fantastic at last-minute parties.

enter caleb.

everything for me changed. i went from "spontaneous, fly-by-the-seat-of-your-pants" lynsey, to "just-in-case-this-happens" lynsey. i became an over-planner, an over-packer, an over-stresser, an over-worrier.

now here's the 'why' behind the change. because caleb was that kid. and i'm not exaggerating here, he was the one who would have a poop blowout the minute we arrived. anywhere. he was the one who suddenly spiked a fever out of nowhere. he was the baby who projectile vomited everything he had eaten in 24 hours when you were least expecting it. this is leaving all of his seizures & screaming aside. he did the rest of it, too.

after cleaning out others' cars (still sorry about that dad), walking out of church with vomit covering me all the way down my skirt past my knees (and having had to literally throw away my wool sweater in the church bathroom), carting a baby in the middle of winter in only a onesie and socks back to the car, i learned. and learned quickly.

our diaperbag turned into an over-stuffed managerie of pretty much everything you could think of. my mom would comment often about how heavy it was and how much stuff we carted around.

i constantly had an extra set of clothes for caleb, tylenol, a nose sucker-thingy, washcloth, several empty plastic garbage bags for carrying home nasty clothes, diapers, wipes, a changing pad, burp cloths, toys, his latest medicine, bottles and formula.

don't even get me started on going on trips. it became insane.

this packing is only the tip of the iceburg. when it came to caleb's health, i too became the one who always said, "well, let's take him in--just in case." and why?

because he was the one who always had something. everytime others thought i was over-reacting or being too paranoid...which would make me question myself at times...we would find out there was something wrong with him. and not just "ear infection" wrong. it would be "spinal meningitis" wrong. and we'd end up in the hospital for 3 days.

i learned quickly to speak up for not only my son, but for myself. because there were many times throughout those first couple of years that i would just get this....nagging...for lack of a better word. i would mimic others and say out loud, "it's probably nothing," but in the back of my head i would always think, but what if it's something?

there were several times when i actually had to dispute what doctors told me and push to get them to listen.

when i first brought him in for his seizures at 10 days old...it's just colic, the doctor said. and put him on reflux medicine. we continually brought him in & said that something was wrong. two months later, when she finally witnessed one of his "colic episodes," she immediately said the lovely words, "that's not normal" and put him in the hospital for an entire 3 day work-up of tests.

3 weeks later, caleb got a fever. he cried non-stop. this wasn't unusal for him, but there was something unusal about it. the nagging feeling came, so i took him into the doctor.

it's just a virus, it will pass, the on-call dr. said. the nagging feeling didn't go away, and neither did caleb's fever.

3 days later, i pushed to take him into the ER on a sunday. they looked at me like i was crazy. and finally, did a spinal tap. we spent 3 more days in the hospital after he tested positive for spinal meningitis.

so anyway, this trend continued.

i know there were family members who felt (and probably still feel) that i was too over protective of him. even though it is difficult for me, i have learned to stop caring what others think. because i know my son. i was given the gift of having divine inspiration for him and each time that i have listened to the nagging (which i recognize as the holy ghost), i have been right. so my confidence in my abilities as a mother grew.

not only that, but i could not take advice from others who had only experienced healthy children. no one understands what it's like to have a baby with health issues unless you actually have one.

caleb-2 1/2 mos., 1st out of 3 EEG's

so when i would hear, "oh, i've had 4 kids of my own and they all get sick, and they all end up fine. you just need to relax," my insides wanted to scream out, "but you've never had one who had to spend the majority of his first year in a hospital, with specialists trying to figure out what is wrong with them!"

it was frustrating. i felt like i spent a lot of time trying to justify my reasoning as to why i wasn't comfortable just passing him around the crowd, or letting sick kids around him. or just letting others baby-sit him when he was having seizures.

okay, i will stop rambling about the past. we are through it, and i'm grateful. there's a purpose for the rambling.

the point of all of this, is that being the "just in case" lynsey became exhausting. anxiety broke out constantly, mainly at night when i would try to sleep. but it was there in the daylight too, i just tried to keep it to myself. even ben only knew about 50% of it.

as the years passed, i began to relax more. and really, during it all, i had the faith that caleb would get through it. i never questioned that. my anxieties mainly stemmed from knowing that he was my (and ben's) sole responsibility, and that i didn't want anything to happen to him due to my negligence or being too casual like i felt others wanted me to be.

enter leah.

even though she had a few weeks of a screamfest, i could tell from the beginning that this would be a different experience. she seemed stronger, sturdier, healthier. chubbier. and i know that sounds weird, but with a baby who has extra chunk, you worry less about them getting sick and losing weight.

so.

a couple of weeks ago, she started waking up in the middle of the night, panicking. it was like she had a nightmare, or like something was bothering her. she would all of a sudden take in this huge breath and then pant like she was scared or hurt. sometimes she would arch her back and cry out. at first she would only do it once at night.

i thought it was weird, but didn't worry. i figured it was a nightmare. it went on for several days, and then it began happening 3, 4, 5 times at night. i knew then that it wasn't a nightmare, that something really was bothering her.

i lay her next to me and would watch her sleep, to see if she had some sort of sleep apnea and would actually stop breathing. she didn't.

anyway, there was one night where she seemed particularly uncomfortable. i sat next to her on the bed for several hours and she woke this way around 5 times. i finally thought to myself, "okay, if she does it one more time, i'll take her to the doctor tomorrow. she probably has an ear infection & it's making her wake up. or maybe it's reflux."

so she did it a couple more times and i made the decision. the next morning, i called for the appt. and took her in that afternoon. when i explained what was happening, i thought for sure they would look at me like i was crazy. (because that's how the doctors looked at me with caleb.)

instead...

"you need to take her straight into the hospital. tonight." they told me.

what??? what was happening here? they explained that if it was some sort of sleep apnea or seizure going on, they needed to monitor her overnight and do some tests.

"i'm thinking it's just reflux, or maybe she has a cold," i answered. "is it really necessary to go to the hospital?"

they were insistent. "just in case," they said.

i called ben, who was equally as shocked. he had to call in at work, and i came home to pack an overnight bag.

it was an exhausting night. between the plastic fold-out couch, the constant beeping from leah's heart & oxygen monitors, and then having to jump up everytime she did one of her "panic" wake-ups to write down how long the episodes lasted and then call the nurse in.

very. little. sleep.

they ordered an EEG, but because it was the weekend, weren't able to do it until the weekday. and asked if i wanted to stay 2 more nights. because the nagging feeling wasn't there, i quickly said, "no, thank you," and said i would follow-up with the doctor.

however, before we left i made sure to get a quick picture with the large mouse bringing balloons.

and thought, "well this will be the only time we'll have to be here for her, glad that's over." naive little me.

two weeks later, wednesday (yesterday), leah spiked a fever. she had been acting funny for the past couple of days. not sleeping well, not eating well. then the fever showed up. she acted okay if she was on tylenol, so i thought maybe it was an ear infection.

i knew that not only today (thurs) was ben's finals, but he would be taking the car for his overnight job and not coming home until friday morning. which would leave me without a car for 2 days. so i asked him yesterday if he thought i should take her into the doctor because if it was an ear infection, i just wanted to get it out of the way and not have to wonder.

we went back and forth, then finally decided just to do it so that ben wouldn't have to miss school or work if she got any worse.

i get to the dr's office, and explained. they take her temperature, which on tylenol was like 101.8. they become concerned. she didn't have an ear infection, or a sore throat. they took a flu test, it was negative. suddenly they're drawing blood from her arm. then doing a catheter to check for a bladder infection.

all negative. so what do they say next? yep, you guessed it.

"you need to go straight to the hospital and have them do a spinal tap. it might be meningitis."

"seriously??? can't i just take her home and watch her and promise that i will take her in if she gets any worse?" i ask.

"no, because there could be something seriously wrong with her and we want to make sure--just in case."

i was overwhelmed.

suddenly, the words that i always heard myself muttering to others came back to bite me. i was rolling my eyes on the inside, thinking that they were being overly cautious, and i couldn't believe that we were being sent back in for a long night in the ER.

lil sweets being patient in the ER.

i also knew what a spinal tap on a 3 1/2 mos. old baby looked like. been there. and, again, because i didn't have that nagging feeling, i wasn't comfortable with them doing that on her. it is horrible.

i called ben, and for some reason, started crying. i just couldn't believe we were re-living 4 years ago. both babies were at the same age for the first visit to the hospital, and now they were the same age for their spinal tap hospital visit.

it was so weird for me that the tables had been turned on me. i knew that because of caleb's health issues, i was being treated differently. with more caution.

and even though 4 years ago, all i wanted was a doctor who would listen, take me seriously, use more caution, right then it was the last thing i wanted. i wanted to hear them say, "oh it's nothing. take her home & she'll be okay."

so anyway, after spending 5 torturous hours in the ER, more blood drawing and another catheter (because they wouldn't take the tests done 4 hours ago), the resident doctor came in. and luckily said the words i had been hoping to hear.

"this baby looks fine. she probably just has a virus. i really don't want to do the spinal tap on her."

i could have kissed the resident. we came home at almost midnight, exhausted. on the way i told ben to remind me of this experience every time i say the words "just in case" so that i can make an educated decision before heading into the doctor.

i need to relax a little, to realize that i did have a baby with health problems. and i need to listen to the voice that is no longer nagging, because leah is not the same baby that caleb was. it's hard though. i didn't realize how hard it would be. but after the last 2 experiences in the hospital, i know that it's necessary.

to make sure that i am deciphering between what is real in the present, and what is in the past, and is no longer part of my reality. interesting.

i feel that my character is growing again. that i am learning to come back to my old, fun, spontaneous self. because no one can keep up this intense, anxious, stressed out self for too long without it taking its toll.

it's not that there aren't times when you need to push, need to take your own advice over others', need to listen to the nagging. but this just wasn't one of those times.

still though, i watched her closely last night and let her sleep in the bed with us.

I'm so sorry you had to go through that! I've only experienced a small slice of that and the emotional spectrum is horrible! I wanted to cry when I took my 4 month old Stockton into the dr. for an unexplained fever and they did a catheder on him and drew blood. They almost sent me to the hospital, which I was praying they didn't and fortunately it must have been a virus because he never got worse. But I hate that feeling of "should I take them in or not?" There have been times it's been nothing and times that I've been very glad I've taken them in. That is so neat that you have that ability to feel what's best for your kids! I don't think I have that very often! I'm glad to hear your feeling like your old self again (not that your old.) :) You were always so happy I couldn't imagine you different! I would really love to see all you guys again, it's been so long! Have fun in Phoenix!

Oh Lynsey...I HATE EEGs and those horrible hospital cribs. I am so sorry you had to do this again...but I am glad it all turned out okay. You are a trooper. That is neat that you are so great at listening to the feeling to protect your kids. I hope she is doing well.

Cute Lynsey......even if things are hopefully just fine, it still is just so miserable. I'm sorry you have to do this again. It's so hard being a parent and knowing what to do and what not to do. Your kids are lucky to have you. Thinking of you.

Lynsey you stronger than Superman! I am amazed at the strength you have & don't you even try to deny it! You are Wonder Woman!! I am so happy Leah is okay. Oh and it has been a week since we have seen you....too long! How about a playdate on Monday???

You really are amazing Lynsey! Of course you will not be surprised by this, but I was bawling as I read through this post. I remember talking to you at the hospital when I was there with Kev. You told me to tune into my motherly instinct and that I should not let anyone tell me no if I felt something wasn't right. I can't imagine going through what you have gone through but I am so grateful for the learning and growth you have made and that you are so willing to share it with us! Love you!

Wow! I'm so sorry you had to go through that again but so glad that Leah is okay. When Matthew was first born and still in the hospital I was told that mother's are given a gift to know how to help our children when they go through these trials and what is needed to be done in these situations. I totally found that to be true even if it wasn't always easy. I would question myself sometimes. You've definitely used this gift to help Caleba and Leah. Thanks for your wonderful example!

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About Me

nicknamed "midge," short for midget... though i'm not one, but i'm close.
i don't love capitalizing, but twitch over incorrect grammar. a lover of music, sweaters, books, photography, naps, pesto, writing, rainy days, stimulating and deep conversation, the ocean, laughter, nutella, and the oregon coast.
married 13 years to a man who likes to express himself through his facial hair and an addiction to cheese, a mother to an intelligent and easily excitable 10 yr old son with cerebral palsy, a 6 yr old daughter full of imagination, sassiness and laughter, a 4 year old hilarious introvert, and our curly-haired sweet but fiesty 1 year old.
this is where i write about surviving as a wife of a doctoral student in the heat of arizona, our move to doctoral internship in texas, pooping adventures, overcoming challenges, overgrown backyard weeds, continual growth and self-awareness in therapy, family love and sibling fights.
currently on a journey of self-discovery, self-worth and acceptance.
i have a tendency to ramble.